#she doesn’t have covid especially bc she went to the hospital to get tested and was in a room where covid-positive people certainly were so

[disasterhimbo]

My parents gave me money for Christmas instead of buying eSIMs for Gaza like I asked for and now I’m tempted to use it on groceries instead 🙃 being poor fucking sucks lol

[lifeinliminality]

BC/AD

I want to tell this story. I think it is important to tell, especially in this moment—when collectively we are straining against the changes wrought by a global pandemic.

Maybe I should start by saying that sometimes stories are something you’ve been working on in your life for years. You’ve crafted and cultivated it. Nurtured and pruned it to your liking. But this story was thrust upon me. This story began in an instant and I could do nothing but see it play out, catch up to its lightning speed pace, and hold on for dear life.

This story began on January 13, 2018 at approximately 11:30pm. It began with a sleeping child on a gurney in a hospital emergency room with his worried parents and a hesitant ER doctor.

While holding my sleeping child, I was given the worst news you could imagine: “He has blasts in his blood. When a child has these blasts it points to leukemia or lymphoma. We’ll be admitting your son tonight.” Cancer. Six letters that spell something life changing.

I remember a teacher once describing the difference between B.C. and A.D. when referring to dates in a history book. When I was a child, I used to think about it as “Before Christ” and “After Death” (meaning Christ’s death). I always thought it was such a strange and monumental way to mark time. Now, it doesn’t seem so strange. Our lives are literally divided into B.C., “Before Cancer” and A.D. “After Diagnosis.” But I’m getting ahead of myself.

For all we knew, our son was a healthy and happy almost three year old. He was a younger brother and would soon become a big brother—just two months prior to this night we had discovered we were pregnant with our third child. He liked Paw Patrol and playing soccer and other sports. An old soul from birth, our middle child both impressed and challenged my husband and I with his iron-strong will.

He had gotten a cold shortly before Christmas. But unlike before, he didn’t bounce back to his normal effervescent self. He got pale, was emotional, lost his appetite and after we spent the night of January 12th up every hour with him moaning, my husband decided to take him to the pediatric urgent care. I had to go to work that afternoon. I run a community wide children’s program in Montclair, New Jersey. My husband said he’d take both boys to the urgent care if he still wasn’t better after his afternoon nap. I met them there that evening after the event, in time to hold my son down while they fished around for a vein from which to draw blood. I hate getting blood drawn. When I was a child, I’d had to be held down because my younger brother was sick and they wanted to make sure I was okay. It traumatized me. But more than having my blood drawn, I hated having to be the one holding my child down for this. Little did I know that this would become a routine part of our existence.

While I waited with our middle son for the blood results, the other two hit up Smashburger in the strip mall next door. It was dinner time now and we were anticipating a rush once we left the urgent care to get our kids fed and ready for bed. Instead, the doctor came in and asked if there was someone local who could take care of our older son while we went to the pediatric emergency room. She was very specific: take him to [redacted for privacy]; no, you cannot go home and eat dinner with your children first. And don’t Google anything. I remember how strange that comment was—mostly because I didn’t even know what I would Google. She hadn’t told us anything about the blood results, only that we needed to go immediately to the Pediatric ER and that she’d called ahead.

We called our pastor, and his wife came over to stay with my oldest until my sister could get out to us from Long Island City.

My husband and I spent the 20-minute car ride to the emergency room trying to distract our two year old with his favorite song at the time: I’m Still Standing from the movie SING! An Elton John classic. It instantly became our mantra in the days ahead.

So there we were, the ER doctor just left the room after dropping the cancer bombshell us. I instantly started weeping, as did my husband. It was completely surreal. An orderly came in to wheel us up to the fifth floor of the hospital. We gathered our things. I was on the gurney with our still sleeping boy. It was after midnight now. January 14th. I don’t think I fully processed that leukemia was cancer until I saw the sign “Pediatric Hematology/Oncology” painted over the door we entered on the fifth floor. It was a waking nightmare.

We were 23 days in the hospital after his initial diagnosis. The first few days were a whirl of tests, surgeries and a steady rotation of doctors, nurses, and specialists. There was paperwork to sign: releasing the doctors and hospital of liability if something happened to our child when he was under sedation for a port placement, spinal tap, and chemo infusions. There was a social worker, a nutritionist, and a flurry of texts from family members and friends as we slowly put the word out.

Around day seven we got another bombshell—type 1 diabetes. Yep. We got a “two-fer.” So not only were we learning all we could about acute lymphoblastic leukemia and fielding calls, texts, and emails from family, friends, and friends of friends who knew someone with leukemia, but we were learning how to take blood glucose readings through “finger sticks,” calculate insulin to carbohydrate ratios, and give manual insulin injections to our son. Our son lost 9 pounds—which on a tiny toddler body renders a child gaunt. He started to associate finger sticks and shots with eating, so naturally, he stopped wanting to eat. They had to put an NG tube in—a tube that goes up the nose, down the back of the throat and esophagus directly into the stomach, so that we could give him Pediasure if he didn’t eat. He caught a cold somewhere around week two, which meant isolating him to his hospital room. He rarely smiled, he mostly slept and cried about taking the few oral medications he had to take daily. By the time of discharge, he could barely walk. His muscles had atrophied from being in bed for so long. Our once very active child couldn’t even climb the stairs at home or get up from a sitting position without assistance.

The day after we were discharged we were right back in the outpatient clinic at the hospital wrapping up the first of five cycles of what is called Frontline Treatment. Each cycle, outside of that first month is 60 days. But it isn’t necessarily a straight 60 days through. Continuing treatment is tied to how a child’s blood counts (red and white blood cells, platelets, and immune cells) are doing. If they are too low, they won’t continue treatment. If they are dangerously low, you’ll be spending a full day in the clinic getting a blood or platelet transfusion. Some cycles require weekly visits to clinic, some daily. Some cycles had four day hospital admittances. It was a tsunami of information and so many appointments to keep track of, along with his diabetic appointments and my OB appointments. And when we weren’t at clinic we were at home. Our son could no longer be in his daycare. We had to forego his friends’ birthday parties and play dates. It took our boy 11 months to finish Frontline Treatment.

The isolation felt overpowering at times. The parts of life we had to give up, the ways we had to change our routines to protect his fragile immune system. We were in survival mode and mostly just trying to get through each day. He hit remission in May 2018. But while he had no detectable cancer cells in his blood, it didn’t mean there weren’t any—and we would have to complete three more years of treatment.

Fast forward to March 2020. Our son has been in what is called “long-term maintenance” for a little over two years (meaning 14 months more until we are off of treatment). He’s been thriving: back at school, managing his meds well, his endocrinology team has been very happy with how we’ve managed his diabetes amidst chemotherapy and steroid treatments . . .

We’d been increasingly worried about what we were hearing in the news about a novel virus: COVID-19. We pulled our middle child out of school a couple of days before the state stepped in and mandated stay in place orders. Suddenly, the whole world was navigating a BC/AD moment: Before Coronavirus/After Disease. Everyone’s lives were instantly changed; families were having to adjust their routines for a huge unknown. Gloves and masks and disinfectant: a norm in our lives for two years now, were becoming household staples.

During our son’s frontline treatment we did not have to follow recent practices to the extreme, but since the stay in place orders, so many of our friends and family have been reaching out. “So this is what this was like.” Yes. Yes, this is a lot like what we have navigated since our son was diagnosed with leukemia. It’s hard, right?

It is hard. And the collective grief that we are all processing as a result of losing jobs, daily routines, a sense of control, and even loved ones can be overwhelming at times. But always, always amidst the darkness, there is light. There is joy and gratitude that can be cultivated and expressed. There are acts of selflessness and generosity to be witnessed and to perform. This is the “brutiful” gift of a situation like this. And really, this is an opportunity to pause and take stock of what is essential to our human existence and to a life well lived.

Nobody asked for this. Nobody wants it. But we find ourselves in the midst of it anyway. What we do and how we hold space in this time is what will matter moving forward. It will be part of our story. That is all I can offer you. In these BC/AD moments, there isn’t a simple solution or even a lot of answers. But I do know this, we will make it through. Life moving forward will not be the same. It can’t be. But we will find our new normal. My hope? That the new normal will mean that we seek and cultivate community more. That we realize we have all been helped by others and that we NEED others to make it through this life. That we have more generosity and compassion for one another because we are more aware that we’ve all been through some shit. Selah.